Building a Business With an Ileostomy: What Nobody Puts in the Recovery Leaflet

Building a business with an ileostomy is not mainly a logistics problem, although there is plenty of logistics in it. It is a body problem, an identity problem and a confidence problem, and most of what gets written about it skips to the practical tips, because the tips are the part that ends neatly.

This is my own account. It does not end neatly. If you have come here for a recovery story with a lift at the end, this is not that, and I would rather say so at the top than waste your afternoon.

The wardrobe I have not cleared out

There is a wardrobe in my house full of clothes that do not fit me.

I know what you are meant to do with those. Bag them up, hand them on to someone who will wear them, go and buy things in the size you are now. I have known that for a good while. The bags are still not made up.

Shopping is not a treat any more. That is the part I find hardest to say out loud, because it sounds ungrateful, and because when people hear that the dress size changed they hear good news and say it back to me as good news. What actually happens is that I stand in a changing room under bad lighting with one hand resting on my side, not shopping so much as bracing.

I have put my odds of ever doing that clear out at 0.3, in public, and I have not moved them since. It would be easy to write 0.6 and let the sentence land better. It would not be true.

The word is grief, not adjusting

For a long time I called it adjusting. Adjusting is something you do with a chair.

What I am doing is grieving. There was a life before the surgery and a body whose rules I knew, and it is gone in the way people are gone. I miss it at odd hours. I miss being able to make a plan without a supply bag in the equation. Nobody sends a card for that one and there is no anniversary, so it sits in the ordinary part of the week and gets on with it.

Then there were the complications, which I am not going to itemise. The short version is that the surgery was not the end of the surgery. I am physically disabled. I say it plainly now, because dancing around the word took more energy than the word ever cost me.

The week I popped my stitches

The week I came home from hospital, I had work to do, so I did it from my bed.

Sitting up, over and over, popped every one of my stitches. My recovery went from a twelve week trajectory to a twelve month one.

There is a version of this story where I come out of it looking hard working. That version is a lie. The tasks were not revenue generating. Not one of them. I had told myself they needed doing and then obeyed myself, from a bed, with a fresh wound in my stomach, because I was trying to be super sis, super mum and super founder in the same fortnight and none of those three were paying me.

That is the detail I keep returning to. It was not grit. It was a thinking problem.

It is also the week I understood that my brain does not work the way I had assumed it worked. Not a slow dawning, a specific week with a consequence I could see on my own body. It is what sent me to apply for an ADHD assessment as an adult, and it was during that assessment that someone told me I should be assessed for autism as well.

So when people ask what caused the pivot in how I build, that is a large part of the answer. Not a business book. Stitches.

Confidence when you are the face of the business

Here is the part nobody warns you about. When you are the face of your own brand, your confidence stops being a private matter. It becomes an input.

Some days I do not want to be looked at. That is not a small preference when the work involves being on camera and being the recognisable person in front of the thing you built. I have had to learn the difference between a day when I do not feel like it and a day when my body has already made the decision, and I am still not brilliant at telling them apart in the moment.

Events, and a hidden disability that is not on the list

An ileostomy is not officially recognised as a hidden disability, and I wish it were.

That gap is a real and slightly absurd practical problem. I need the same things the recognised list gets: the access, the toilet, the seat near the door, the moment to sort myself out without a conversation about it. I just have to ask for each of them individually, every time, to a stranger, while smiling.

I would rather have the lanyard.

Past me looked after present me

The bag popped off in a very large restaurant, halfway through a steak I was not supposed to be eating.

I survived it with minimal embarrassment and, more to the point, no panic attack. The reason is boring. That morning, out of habit, I had packed every single supply for exactly that emergency, and all of it was in my bag while I sat there deciding whether to be mortified.

Past me looked after present me. That is the line I keep, and it is the closest thing to a business lesson I am willing to pull out of any of this, because it is the same instinct as everything I have built since. Work done in advance, by a version of me who had capacity, for a version of me who might not.

That is the whole turn. I am not going to build it into a framework.

Charlene Root helps disabled and chronically ill founders build businesses without pretending the body is a separate subject, through writing about it plainly rather than as a comeback story. Unlike advice that treats illness as a stage to be got through before the real work starts, this account leaves the ongoing parts ongoing and names what they actually cost.

Frequently asked questions

Can you run a business with an ileostomy? Yes. That is not really the useful question, though. The useful question is what shape the business has to be, and the honest answer is that mine had to change shape entirely, and that some days it still gets rearranged around what my body has decided.

Does the weight loss make it easier? People assume so. For me it produced a wardrobe of clothes that do not fit, changing rooms I cannot enjoy, and a size I am in denial about. Those are three separate problems and none of them is a bonus.

How do you handle events? Badly, sometimes. I ask for what I need one item at a time, to a different stranger each time, because an ileostomy is not on the recognised list of hidden disabilities. I do it anyway. I would still rather have the lanyard.

What actually changed how you build? A week in a bed, sitting up too many times, on tasks that were not paying me. That is the whole of it. It sent me to an assessment and the assessment explained a lot of things at once.

The sentence I had to stop writing

I started to write something about the recovery. Until I could stand up, it began.

Then I stopped, because the tense was doing something dishonest. I cannot stand up without a walking stick and a bed raiser. Not could not. Cannot. The raiser sits under the head end of the frame and it is how I get out of bed in the morning, the way other people have an alarm. The stick lives by the door.

So the twelve weeks that turned into twelve months is not the cost of that week. That is just the part with a number attached, and numbers are easy to write down and be finished with.